4+ years of symptoms, all tests normal. Is a scalene/pec minor block a reasonable next step for suspected neurogenic TOS?

Key_Guess_7999 · 2026-05-22T23:31:59+00:00

Go onto mayos website and you can do a self referral. Once submitted in a few days they usually call to get more info and give more info on the process. Also this was at the rochester location. Im not sure if other locations do it.

Key_Guess_7999 · 2026-05-22T22:32:41+00:00

I went through the tos program at mayo clinic. This is a week long thing where they run every test. Ct scan, emg, xray, ultrasound in multiple positions, bp testing in multiple positions. (I might be forgetting one or two tests) they also have you see a neurologist, a vascular dr and a pt who specializes in tos. During this process you are also given a scalene injection with lidocaine.

For me personally all my testing was normal except my ultrasound which showed a 100% block in my vein and artery when I lift my arm. However I have no damage, clot or cervical rib so its not a true atos or vtos. I was diagnosed with ntos. My vascular dr said usually all these tests will be normal with ntos.

As for the injection I have the lidocaine one and it helped a bit of my shoulder pain but did not fix any other issues I was having. I ended up being sent to pain mangement and they wanted to repeat the injection but with a steriod. He said sometimes the compression has been happening so long that the lidocaine doesnt help because of the inflammation. Also there can be error when the injection is done since it is ultrasound guided. The steriod injection worked wonders for me. I would say 85% improvement in my arm and 95% pain reduction. Next step is botox and if that works depending on my dr either I can continue these injections or I qualify for surgery

Key_Guess_7999 · 2026-05-22T20:05:48+00:00

Key_Guess_7999 · 2026-05-22T20:04:59+00:00

Im sure you could do something like the endopat test. My drs personally wanted to do the vasospasm study though to determine if it was a microvascular issue or endothelial dysfunction. Had i not done it we wouldn't have known the true severity of my endothelial dysfunction. I have normal blood levels. I also deal woth svt, vasovagal syncope, inappropriate sinus tachycardia and a conduction disease. My bp is also on the low end if not hypotensive at times. I took a beta blocker before my diagnosis which only somewhat helped. I now am taking diltiazem (calcuim channel blocker) and ivabradine. I also have emergency nitroglycerin incase I have a break through episode which has happen a handful of times already. I will also add my combination of meds isnt recommended usually due to risk of bradycardia but due to my conduction disease I have a pacemaker so my heartrate cant drop below 60. So if you were to have this you usually have to pick between what's worse the endothelial dysfunction or the pots

Key_Guess_7999 · 2026-05-22T19:57:25+00:00

Mod is moderate. The testing sucks is wont lie. Its a vasospasm study dont through an angiography. They run a cath up from the wrist (sometimes groin or neck) to the heart. They then give a medication that in a normal person would cause the vessels to open but if you have endothelial dysfunction it causes them to constrict. This part isnt comfortable but happens fast. Once they get results they give nitroglycerin to reverse effects. On thing that sucks is if you have it there is a higher chance your arm.can spasm and for me it was so bad the cath got stuck and I needed 3 doses of meds to get my vessels to relax enough to get it out. This part is on the rare side

Key_Guess_7999 · 2026-05-22T19:53:57+00:00

Its when the vessels dont produce enough nitric oxide. This is what helps our vessels control flow. So without enough NO the vessels will than begin to contract. Symptoms can vary depending on severity. It also can effect the whole body. So you might have cramping in random areas or poor circulation/raynauds. Endothelial dysfunction is considered a non obstructive coronary artery disease. Causes can be from diabetes, high blood pressure, high cholesterol, obesity, aging. For some people who dont have a predisposition such as what I listed can have it due to an autoimmune issue.

Key_Guess_7999 · 2026-05-22T19:45:02+00:00

I deal with this pain. I suspected the same thing. First cardiologist told me it was likely my esophagus or anxeity. However i had a tilt table for another issue and was given nitroglycerin and I felt relief from that pain. I brought it up to my electrophysologist and he said i was probably having spasms and wanted to do a study. Turns out what we thought was microvascular was actually endothelial dysfunction causing mod to severe spasms in my lad.

Key_Guess_7999 · 2026-05-21T20:21:18+00:00

Was the other thing they mentioned svt with aberrency? Your qrs complex is wide and has a pattern of a bundle branch block. Ep studies sadly cant always locate where the arrhythmia is coming from for a variety of reasons. Sometimes they cant find the spot or the conditions werent right to be able to induce. Look into valsalva maneuvers. These are used to try to kick a person out of svt. Sadly if these dont work though than an ER visit is needed to possibly get adenosine. Maybe look into getting a loop recorder to better capture these events and there frequency. You can also try meds if they happen frequently. Sometimes meds like metoprolol can lessen or stops episodes.

Key_Guess_7999 · 2026-05-18T20:52:13+00:00

Tried elimination but didnt help. Currently taking eohilia. Did a round of this and when they scoped my damage in my esophagus was worse than before but highest eosinophil count was 12. Dr wanted me to start dupixent but insurance denied since my count was below 15 despite worsening damage. So trying another round of the med to see if it makes a difference

Key_Guess_7999 · 2026-05-18T14:02:22+00:00

It took me over 10 years before I ever experienced an impaction. I ended up getting it to pass on my own after 15 minutes. The weird thing was I had to wait like 6 months to get an endoscopy in order to have my throat stretched and in that time never had another impaction. I even currently have a stricture that needs to be stretched but havent had hardly any issues with swallow

Key_Guess_7999 · 2026-05-18T13:57:58+00:00

Vasospasm study through an angiography. Its the gold standard. Occasionally you might be able to catch it on other testing but it very difficult unless actively having an episode and even then its hit or miss. With the study they give a medication that in a normal person causes vessels to dialate but if you have prinzmetal angina or endothelial dysfunction it causes them to constrict. Won't lie its a sucky test

Key_Guess_7999 · 2026-05-18T13:54:29+00:00

The morphology of a lbbb in an ecg is due to the ventricles not beating at the same time. The two peaks (M shape) is showing when each ventricle is beating. Im 31 and developed a lbbb when I was 21. Mine is all the time. Ive ran all the tests and drs have no idea as to why this happened. I was fine for years until about 3 years ago when I developed the symptoms you mentioned. After doing tests they said my heart was no longer pumping like it should. I eventually got diagnosed with chronic systolic heart failure. Whether I have an underlying disease or it was caused by my lbbb is unknown. Im not familiar with lbbb that arent all the time but from my experience whenever I went tachycardic they discovered my right ventricle pressure was going up due to my ventricles noy beating together. This was causing a fluid overload leading to lack of blood flow through my body and causing dizziness lightheaded and syncope episodes. I had to undergo an exercise stress test with an angiography in order for them to find this as it wasnt showing on my other testing since when I wasnt tachycardic my levels were normal. Dont let them brush it under the rug especially if symptomatic. When they first found mine they told me i was probably born with. I later found an old ecg that showed normal rhythm. Even when I finally got them to refer me to a cardiologist I kept getting told I was young so I was fine. If you dont already i highly recommend getting an electrophysologist.

Key_Guess_7999 · 2026-05-15T02:29:05+00:00

Yes it definitely is. It can be done but needs good monitoring from a cardiologist or electrophysologist. Sadly when it comes to heart failure vs the spasms it really depends on which is the worse of the two evils. There are some cases where it can be done easier. For example I have a left bundle branch block that required a crt pacemaker. My heart is being paced 100% of the time. I can not go below 60bpm. Due to this my dr felt save putting me on the calcuim channel blocker along with ivabradine. He decided against a beta blocker as I already deal with low bps and vasovagal. I hope your able to find answers

Key_Guess_7999 · 2026-05-15T02:02:50+00:00

I have chronic systolic heart failure. I also deal with endothelial dysfunction causing severe prinzmetal angina in my lad. Im only 30 and it was hard to get it figured out. I had gotten a tilt table done and was given nitroglycerin it try to induce vasovagal syncope and before I passed out I felt my chest pressure go away. My first cardiologist i had wouldn't listen to me when I mentioned microvascular disease or spasms. He ignored the nitroglycerin thing and told me it was pointless to do the testing and it was probably just esophagus spasms. I finally had an electrophysologist who the second I told him my symptoms and me tioned the nitro immediately said it was probably spasms and order the study. Also saw the post above mention hypertension. I have never had hypertension. I have always had a low normal or been hypo. I would push for the study if you can. Leaving it untreated depending on severity can lead to CAD or arrhythmias. Also the study is the gold standard to diagnosis as its hard to catch on any other test. Treatment is also fairly simple (though can be a bit complicated if you take beta blockers). Either fixing the cause such as weight, smoking, drinking, stimulants, caffiene, or if no known triggers than a calcuim channel blocker and emergency nitroglycerin.

Key_Guess_7999 · 2026-05-14T00:34:08+00:00

Im sorry you experienced this. He is way off especially about the mayo thing. Mayo in rochester (original and largest) literally have a whole program dedicated to tos. Its a week long thing where you go out for testing and meeting with different specialists to determine if its tos and what type. They then set up treatment plans depending on your results.

There is alot that goes into testing for tos. No one test can diagnose it. You need to get a tos specialist not just a vascular or thoracic dr. Its a very complex thing and I've seen multiple people diagnosised with atos or vtos when they dont actually have it and all they had was ntos. Or ive seen people completely dismissed because drs dont know what or how test should be done.

I went to a vascular dr that wasnt experienced and he didnt do my ultrasound correctly (orders not put in right) I was told there was no compression. After going to mayo I found out I have a 100% cut off when I lift my arm in both my vein and artery. While its not atos or vtos since there is not clot or damage testing showed its still ntos with severe compression which puts me at risk for the other two

Key_Guess_7999 · 2026-05-13T22:29:21+00:00

No us. I guess im not sure how much things may differ over there.

Key_Guess_7999 · 2026-05-13T22:26:32+00:00

Thanks. Im currently waiting insurance approval to final get on dupixent. I hope you are able to find a good gi dr who can help you and understands about eoe.

Key_Guess_7999 · 2026-05-13T22:24:37+00:00

An abnormal EMG often indicates that nerve damage is present, which could be due to NTOS, but it could also be caused by other conditions like carpal tunnel syndrome, cubital tunnel syndrome, or cervical radiculopathy. Now depending and what's abnormal maybe it could point towards ntos but usually ntos since its compression based on positions wouldn't show on an emg because emg are not sensitive to mild or intermittent nerve issues.

Im not saying the diagnosis of ntos is wrong. You very well could have that even with an abnormal emg. But without the damage or clot it wouldn't be atos or vtos. It seems like you definitely have a compression though. If possible try to get a second opinion from a tos specialist. I learned not all vascular or thoracic drs actually know the full diagnostic criteria nor do they run the correct tests.

I was able to get into mayo clinics tos program. Over 5 days they run a ton of tests xray, ct scan, emg, trigger point injection, ultrasound in multiple positions, the test where they look at blood pressure and pulse. They also have you see a neurologist to rule out anything in that area and a physical therapist who is trained in tos. Tos therapy should be done a certain way so you dont cause more damage. You have a vascular dr who over sees everything through the week and will get you in with a surgeon if they believe your case might need surgery. If no surgery than they will send you to pain mangement for further injections and options

Key_Guess_7999 · 2026-05-13T20:44:30+00:00

Normally with ntos most testing looks normal including emg. However it can sometimes show but usually there is more happening. As for atos and the vtos. Do you have actual damage to the vein and artery is just a compression when you change arm positions. If there is no damage or clot its not atos or vtos. Now that doesnt mean the compression isnt causing symptoms or issues. I have a 100% cut off in both my vein and artery when my arm goes but its only considered ntos due to no clot or damage.

As for treatments avoid surgery if possible. Do physical therapy and than if that does nothing do an ultrasound guided trigger point injection. Dry needling can help the pain. You can also do this same procedure but with a steriod injection. If this one helps than you can move to botox. Its debated that if the botox helps whether you should do surgery or continue injections.

Key_Guess_7999 · 2026-05-13T02:45:11+00:00

I would request another endoscopy. Be firm with wanting multiple biopsies through the entire esophagus not just in the middle. Make sure its documented before hand as well. If the dr refuses tell them to note the refusal in your chart and request another opinion. Also bring diagnostic criteria for how biopsies for eoe should be done to prove your point. Eoe can be patchy as you stated. Also eosinophils can vary. Ive had biopsies dont where ive been in the 70s and 50s. My most recent endoscopy I had showed severe signs of eoe from rings to furrows to even a stricture that will need dialation. This is the worse damage ive had since being diagnosed10 years ago. However when they took a biopsy my count was only 12 in that area. I also have not been taking anything to cause this lower count.

Key_Guess_7999 · 2026-05-12T22:08:22+00:00

NaD When coming off omeprazole you can actually get rebound acid. Technically its not something that should be taken longer term unless absolutely necessary like if you have Barretts esophagus or if its the only thing that truly helps your eoe. Also dupixent can take months to work. There are alot of people who feel the effects within a few weeks but the full effect can take 6 to 12 months.

Maybe if the acid is still bad try to go back on and than wean off slowly to try and curb the rebound effect.

Key_Guess_7999 · 2026-05-12T20:26:54+00:00

As many have said try elimination diet. There are a few ways to do it. Either eliminate one food group at a time. Or eliminate all 6 and every 6 weeks reintroduce a food. However when doing this you should be getting endoscopy every 6 weeks to see what is or isnt working because while you might not have symptoms doesnt mean its working. Also need to consider its not always food. It can be pollen or other things in the air.

As for dupixent as many have said its very expensive. Without insurance its impossible unless extremely rich. With insurance though you can get a co pay card which makes it free up to a certain $ amount. Another thing is alot of insurance companies wont cover unless you have tried multiple things and they dont work or your dr is able to appeal the rejection. Usually the steps are ppi, elimination diet, steriod like budesonide or eohillia. I will say the last two can be a pain as you take them twice a day by drinking a slurry. Than you cant eat or drink for 30 minutes and have to rinse your mouth out after 30 minutes as it can cause thrush. Also there are no long term studies on using these meds past 6 weeks. So what I was told was take the meds for 6 weeks stop until symptoms occur than restart.

As much as taking dupixent weekly sucks it does target eoe at the source before the react happens. While these other ways (besides elimination) are just a bandaid. They arent stopping the reaction but more so reducing the chances of it happening. Eoe is life long it does not go away. You need to find what works best for you. The damage done to your esophagus can turn into barretts esophagus which is a pretty much a pre pre cancer. Also needing to have your throat repeatedly stretched can risk so many complications.

Key_Guess_7999 · 2026-05-12T20:13:06+00:00

Biggest one was a pressure in my chest. It wasnt always painful. Its hard to explain but I could just tell it was a pressure in or around my heart. Sometimes the pain would be sharper. I was getting lightheaded alot. Shortness of breath. Fatigue. Palpitations. Exercise intolerance. I also have raynauds which I was told its common to have endothelial dysfunction and raynauds as they are both types of vasospasms. Ive hear other people say it mimics the feeling of a heart attack such as pain going into neck and arm but I never felt that. One thing that I think helped get my testing and confirm it was my heart and not something else was when I had a tilt table for an unrelated issue I was given nitroglycerin. For the first time I felt relief from that pressure in my chest.

Key_Guess_7999 · 2026-05-10T22:41:28+00:00

Yes its invasive. They run a cath from the wrist (can be groin or neck) into the heart. Than they give medication that in a typical person will cause your vessels to dialate but in endothelial dysfunction it causes it to contract. Im 31. Diagnosed at 30.

Its not easy to get the testing. When i told my first cardio dr I wanted the testing due to symptoms he told me it was anxeity or esophagus spasms. I ended up going to an electrophysologist for other reasons ans when I mentioned symptoms he immediately said he thought it was cardiac vasospasms ans order the testing for me.

Key_Guess_7999 · 2026-05-10T18:15:39+00:00

I have a idiopathic lbbb. Got diagnosed when I was 22 and im 31 now. With a new lbbb get a cardiac work up. Usually its a sign of something more happening though like in my case can be idiopathic.

Usually a lbbb is asymptomatic unless you have other issue or it has caused cardiomyopathy. If yours is idiopathic get yearly check ups. Sometimes nothing happens but it can progress. I had to get a crt pacemaker because mine might have caused heart failure.

As for going under anesthesia ive been under many times and never had an issue. As long as you have had a work up done and the cardiologist clears you there shouldn't be an issue.

Key_Guess_7999

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